In Feb. 1993 the shadow Health
Secretary, Mr. David Blunkett M.P., looking at the myodil problem, made
four demands of the Government:
1. A Public Enquiry should be held into the matter.
2. Compensation payments.
3. Myodil Arachnoiditis to be made a
notifiable illness, with benefits claimed under
special rules, as for terminal illness.
4. Training for doctors and medical
staff, in diagnosis and treatment.
These are reasonable demands, based on
justice and the needs of the people involved. It is still imperative
that these actions are carried out, to alleviate suffering. The purpose,
of these case studies is to illustrate the issues and problems still
facing myodil victims and to reinforce the points about Public Interest.
There are six case studies (none longer that two pages); each study in
meant to illustrate an area of interest and debate.
Casual Procedure: illustrates that a very serious procedure came to be
carried out routinely and for reasons far outweighed by the risks.
2. The Search for Relief: illustrates
the futile search for pain relief and the lack of
3. Itís All Psychological:
illustrates disbelief by the medical profession caused
by lack of acceptance of the condition.
4. If Been Told the Risks:
illustrates that myelograms were carried out without
5. Nobody Listens: illustrates
distrust and conflict between patients and doctors.
6. Litigation Prohibition:
illustrates legal boundaries set up that prevent justice.
CASE 1 THE CASUAL PROCEDURE
This case is meant to illustrate how
the procedure was carried out routinely, casually, and for relatively
In 1974, Mr. A. was an
eighteen-year-old soldier who had complained to the doctor that he had a
mild nagging ache at the back of his knee. During this time, at
weekends, he was doing thirty-five mile hikes, with full pack and kit,
over extremely rough terrain (Brecon Beacons and Dartmoor) whilst
carrying out his normal duties during the week.
He was sent for physiotherapy on his
knee, but, because of his mobility and the amount of work he was doing,
the physiotherapist suggested that there was nothing wrong with it and
passed him on to another doctor who decided to investigate using a
myelogram. It must be reiterated that this was an extremely fit soldier
who was carrying out his normal duties during the week whilst doing
extra volunteered work on weekends. Also, it should be noted that, at
that time, he was below the age of consent.
The soldier was inquisitive about the
procedure: in answer to his questions he was told that myodil was
completely safe, and would be excreted out of the body within a few
days. More that thirty years later, the dye is still detectable. The
only side effect that he was warned about was, that it was possible get
a mild headache afterwards, but which would soon disappear.
A myelogram was given; his
description of this procedure is similar to others who underwent this
procedure: Ďa harrowing ordeal, where I wretched green bile all over the
nurse who was holding my hand.' The pain and headaches that followed
were incredibly severe. As a result of the myelogram, a laminectomy
operation followed. Recently, doctors have looked at the original
investigation results and have written that there was no reason for any
procedure to be carried out at all.
Mr. A. states that immediately on
awaking from the operation he knew that something was drastically wrong.
Imagine his terror: he had walked into the hospital fit and healthy,
with the exception of a mild ache in his knee; he woke up in intensive
care in incredible pain, that not even the morphine would take away,
unable to move his legs without extreme difficulty or agony. He spent
six months in hospital and nine months in a rehabilitation unit learning
to walk again. After this time he was returned to unit to finish his
radar training; though he never regained his ability to walk without a
limp or pain. He had a restricted trade working on a new missile system
of which there where too few engineers, so the army were willing to keep
him on without allowing him to take up normal duties. In 1978, the army,
keen to get the soldier back to normal duties, decided to do another
myelogram to see if there was anything else that could be done. This
proved to be more of an ordeal than the first. Only a couple of hours
after the myelogram, he was sitting watching the hospital TV when he
suddenly started to get painful back spasms. He lost control of his
bladder; and the nurse, with help from other soldiers, managed to get
him to his bed. By then his whole body was jumping in incredibly painful
spasms. It was a sore trial. An emergency operation was performed to
release pressure on the bottom of his spine, and records show his heart
failed during the operation. After coming off duty at work, a relatively
healthy Mr. A. had walked into the hospital for a quick investigation to
see if there was any way to improve his situation; he was not expecting
an operation (he would have refused one) or another six months
This was the end of Mr. A's career
and the beginning of a lifetime of grief, disappointment and pain. We
had a fit man, who, although underage, had been given a dangerous,
invasive procedure, without ANYONE being informed as to the perils
involved -- the Hayman report shows that these dangers and risks were
At that time, there was no way to sue
the crown for negligence or damage caused in service and he is not
allowed to sue retrospectively. He is in receipt of a pension, but the
Pension's Agency do not recognize any myodil symptoms only those
symptoms below the lumbar region and his myodil symptoms range from head
to toe. He is very bitter about the fact that he can get no redress of
grievance; no recognition of his condition, or even a fair hearing. In
1995, at the age of 39, Mr. A. was forced to retire due to ill health.
There is, of course, more evidence of
the casualness in which myelograms were given, for instance: one fellow
had four myelograms; another had his three myelograms in the space of
several weeks (surely completely unnecessary). A young girl had her
first injection at the age of 12 because her toes were numb; she states
she had no backaches or other problems at all before the injections. Her
latest Consultant has argued that the myodil injections just weren't
warranted. These are not the life threatening, debilitating conditions
requiring emergency surgery as the Hayman report claims; and to date,
the M.A.G. have not heard of anyone who was informed of the dangers.
Remember, instructions for use of myodil warn doctors to use glass
syringes (it eats through plastic) and to be careful of spillage (it
burns through floor tiles) and this corrosive liquid was injected into
the nerve centre of the body, the sensitive spinal canal. This was a
very dangerous procedure with doubtful advantages; patients had a right
to be informed of the risks.
CASE 2 The Search for Relief
Case 2 illustrates the traditional
journeys taken by a myodil victim to find pain relief. Lack of myodil
knowledge by the authorities (doctors, pain specialists etc.) severely
hampers this process.
Mrs. B. had a myelogram in 1976 and
recent x-rays show the presence of the toxicant still in her body. This
is part of her story, in her own words.
I am severely disabled; I have to get around when I can on two
elbow crutches. I am also in and out of the pain relief clinic
for something to try and give me a little relief from the pain; but it
does not last very long and then I am back in again. This has been going
on now for many years since I had that dye. It has ruined my life
completely in every way. I can't sleep because of pain all the day and
into hospital every four months for lignacine infusion to try and help
me; it doesn't do much for me but I am grateful of a little bit of
relief. I have to rely on my carers to look after me, my Son 's daughter
in law, who is a nurse, and friends and family. I don 't very often go
out anywhere now because I am in pain all of the time with my back and
legs because I can't sit too long and [although] I can stand very good
with my aids, I have to sit down after a few minutes because of the
severe pain in my back and legs. The pain goes right into my ankles and
toes and I have to wear supports on my legs and ankles.
told, by many consultants I have seen, [that] no matter what I have done
to get relief from the myodil pain, it will not help me at all. I have
been all over the country to try and get help for pain and this myodil
is always thrown at me in a nice way but his does not help me. [Both]
Oswestry hospital and a hospital in Liverpool tell me the same [there is
no relief for the pain] and I have got to accept it because it won't go
to retire from nursing because I could not do my job: I had to have a
lot of time off and I couldn't even lift or push a wheelchair. The
medication I have to take to help my pain is morphine, coproxamol,
diazepam, and tramadol. I am also going into hospital for a morphine
catheter trial because the morphine tablets are not controlling pain
long enough (they last four to five hours instead of twelve). I have had
to have a chair fitted up my stairs as I was having a lot of falls. Some days I don 't know how I carry on,
because I am just getting worse every day. As it is, I have no social
life at all because of all this. What has happened to me? I wish I'd
never gone through it [myelogram] in the first place, because I wasn't
told anything about the drug [myodil] so I went ahead and had it because
I was told I was going to get better for ever and not have the problems
I have got now.
The points to note with Mrs B's case
are that she wasn't told what to expect and she describes the typical
uphill struggle to find pain relief and the lack of real palliative care
available for myodil victims. Many doctors do not understand the true
nature of myodil-induced problems. One old lady who wrote telling of her
pain, states that her doctor prescribes only paracetamol: this is quite
horrifying, as the usual myodil pains will not be touched by this
In addition to the above, a great
many myodil sufferers visit pain clinics, psychologists and
psychiatrists. Chiropractors, osteopaths, acupuncturists and other
alternative therapists are seen at their own expense. Other themes
common to myodil victims, are; chemically induced meningitis, suicide;
health problems due to medication, general mental illness, early
retirements, severe monetary hardships, lost jobs and houses, and
Myodil victims are living appalling
lives with very little they can do about it and most of these problems
stem from myelograms. They complain of lack of sympathy, or even
respect, from doctors (one fellow after refusing a second myelogram, was
told that, instead, he was to have a radiculogram: this turned out to be
a pseudonym for a myelogram). Hospital authorities lose records relating
to myodil and people who have managed to get hold of myodil reports have
often had to go through the MPís to do so.
One problem, which may explain some
doctors' behaviour, is the lack of radiological evidence. This takes two
forms, one the disappearance of records, and two, recent x-rays tend not
to show up very much myodil in its victims. This is because modern
x-rays are often taken up to 30 years or more after the myodil toxicant
was injected and the body has managed to dispose of most of it, however,
the damage has been done, it is just hidden.
In a world where it is painful to
sit, stand or lie down, it would be helpful if doctors, psychologists,
psychiatrists and social workers understood the exact nature of the
problems facing myodil victims.
CASE 3 It's All Psychological
Mrs. C. shows how the medical
profession generally views arachnoiditis sufferers. There is also the
hint of how the legal profession treated myodil victims (took money off
them and then give strange reasons to withdraw).
Whilst working as an SRN I injured by
back. I was given physiotherapy but had little improvement. A myelogram
was carried out at Newcastle Hospital in 1970 and surgery three days
later. Following the myelogram I suffered severe headaches but I was
told that was due to the lumbar puncture. After surgery I was discharged
from hospital with no follow up appointments. In Jan 1971 1 was
readmitted to hospital with severe back pain and stiffness. I was told
that there was no reason why this should have happened, I was given the
impression that they thought I was putting it on and I do now know that
it was written in my notes that they felt that there was, 'a strong
psychological element' to my symptoms. I was given physiotherapy, muscle
relaxants (valium) and painkillers.
I was given no support from my
employers, the Cumberland Infirmary, and I thought that they also
thought I was putting it all on. On my return to work I was first
allocated a geriatric ward and it was only after the intervention of my
consultant that I was allocated lighter duties. I improved slowly, but
never fully recovered my strength or became pain free.
In September 1971 I married and moved
away from Carlisle, but could not work for six months: the pain
continued and I was prescribed painkillers and Valium. During this
period my memory is very vague, I put this down to the amount of Valium
I was prescribed. I have whole incidents in my life I cannot remember.
In May 1972 I secured a part time job
in the A&E dept. of Kendal County Hospital, however, I soon found my
back beginning to deteriorate and I was again referred to Newcastle
Hospital. X-rays showed 'residual myodil in the lumbar sacral spinal
canal,' but this was not sufficient to allow re-screening and a second
myelogram was performed on 22/11/72. 1 cannot remember any of the
discussions that took place at this time; but I was in so much pain I
would have let them cut my head off just to get rid of the terrible
After the myelogram I again suffered
severe headaches. Surgery took place soon after. I was again discharged
on painkillers and muscle relaxants but no follow up appointment. In my
notes dated December 1972 my consultant orthopaedic surgeon raised the
possibility of Arachnoiditis; though I have no recollection of this
being put to me or being explained to me. Once again my back seized up
and another x-ray showed myodil residue present. Again I was told that
there was no reason for this to have happened and was made to feel I was
putting it on. I was given physiotherapy, Valium and painkillers. After
discharge I resigned myself to a life with a 'weak' back and just having
to put up with it.
I always felt that they were treating
me as a young woman and young people should not have bad backs and I was
just putting it on. When I went to the doctors I would complain of other
symptoms [these were provided]. There were times when I was in pain but
had relatively good movement in my spine and this was never thought
through. The doctors met me with no response. There were times when I
thought I was going mad. There were times when I began to think I really
was imagining things. I have sat many times with the pain asking myself,
'are you sure there is pain and you are not imagining it?' But I then
had to answer, 'Yes there is real pain.' I got to a stage where I tried
not to bother with Doctors; but when things did get bad and I worried
about my back I would pay to see someone privately in the hope that if I
was paying they would at least listen to me, but it did not work. I
always came away in tears.
Over the years as usual I had my good
times and bad. I suffered from back and leg pain and greatly from
migraine and as time went on the bad times became more frequent. In 1990
I read about the myodil problem and recognized the symptoms immediately.
I contacted a solicitor who sent for my medical records and had an MRI
scan on 15/10/92. The problem here is, that despite previous reports of
residual myodil and arachnoiditis, this latest doctor said that there
was no definite evidence of arachnoiditis. I pursued the case no further
as I could not afford the cost. Yet again I had been made to feel it was
In June 2000 1 had another scan and
was told the results showed evidence of arachnoiditis possibly caused by
the previous myelograms! I was told there was nothing that could be done
and that I just had to keep as fit as I possibly could. As a result of
this latest scan, I once again contacted a solicitor in an attempt to
get compensation and was told that as my myodil had been used before
1973 I had no claim!!!!!
Mrs C's story is a common one amongst
myodil casualties: disbelief at the wide-ranging symptoms; conflicting
diagnoses; bizarre solicitors advice and the suggestion of psychosomatic
CASE 4 If I'd Been Told the Risks
Mrs E. had two myelograms in the late
1970's; the result was that, at the age of 38 her working life ended.
Mrs. E. went to hospital in 1978 complaining of backache.
My consultant informed me that I was
to have a myelogram. He stated that it was a dye injected into the spine
for x-ray purposes. After the x-rays, surgical staff attempted to remove
the dye. A nurse present at the time, informed me as the task was being
attempted, whilst at the same time she expressed how the team were
struggling to complete the procedure. As a result the dye was NOT
removed. I suffered the most horrendous headache and sickness; more
procedures followed for which the records are missing. During this time
I was unable to walk, sit up, in fact I was bed fast, virtually unable
to move and completely dependant on the hospital staff, for whom I have
nothing but praise for. Eventually I was allowed home under my G. P.'s
care. From then on I was unable to walk unaided and at this time was
virtually house bound.
I have a number of problems resulting
from the myelogram: arachnoiditis; excessive pain and limited mobility;
spasms at night interrupted my sleep pattern; increasing medication for
pain relief and inflammation; Stress due to inability to live my life to
the full or perform the ordinary things that I'd done before the
injection; stress due to sorting out myodil related legal matters, and
the struggle to obtain my medical records since 1992.
All the expenses incurred for the M.
R.I. scan and private consultations were met by me, and due to the
spiralling costs I regrettably had to draw my claim to a close. Another
problem was that a consultant advised me that the Arachnoiditis was in
his opinion caused through surgery. How then was it, that the symptoms
and side effects were present before the surgery? I feel that one doctor
was covering up for his colleagues.
If I had been made aware of the
enormous risk involved in myodil, I would never have jeopardised my
health by having a myelogram. The risks involved were there and
recognised by health officials in this country and all over the world,
yet NO ONE bothered to outline these to me.
I had walked unaided into hospital
with backache little knowing that one myelogram would ruin my life and
leave me disabled, and with the fear of what's to come in the future.
CASE 5 Nobody Listens
When doctors come across myodil
casualties there are often problems because Myodil Adhesive
Arachnoiditis doesn't fit their orthopaedic model of the human body. The
lack of knowledge of the medical profession about this condition causes
unnecessary conflict and distrust between doctor and patient. Mrs. D
years I have been fobbed off by doctors who have been trying to make out
that my problems were psychosomatic/marital/trying to get out of
teaching stress, and at the scanning centre I felt intimidated.í
She goes on to describe how her
consultant was oblivious to her medical conditions (shown on scans taken
years earlier). She then contacted the radiologist to enquire about the
problem, describing how she 'had to be insistent to be put through to
her'. The radiologist agreed to look again at the scans, and, if she
found evidence of myodil and previous conditions, she would make a
not go into the consultant's reactions, or what he said, but there were threats, misdiagnoses, etc. I made
extensive notes immediately after each one. They may not be useful but
it has been an alarming experience, and it's ongoing. Doctors are
frightened of diagnosing arachnoiditis and of being involved. What was
written on the consultantís reports in NO WAY reflects what was said
Mrs. D. then shows the consultants
reports before and after she insisted they re-look at the scans. The
relevant differences are, from the first report: 'Indeed there was no
evidence for any previous problem related to intrathecal injection.'
Compared to the second: 'The radiologist submitted a revised report....
which did reveal some evidence for local arachnoiditis in the lower
lumbar spine.' Mrs. D's story is by no means unique. Mrs. E's experience
was far more confrontational:
X. did his ward round he was appallingly rude to me in front of the
other patients. He screamed and shouted at me.... that 'I shouldn't be
there,'(he didn't give any reason why!) When he left I cried for 2 hours
on the ward.... as the radiologist put the needle in my back there was a
terrific feeling of pressure rushing from my head and I nearly passed
out... I had a severe headache and began to see black spots floating in
my visual fields. However, although they offered me to stay at hospital,
there was no one at home caring for my disabled husband and son so I had
to go.... My left leg faded away to become really thin and the floaters
in my eyes and headaches became worse. I was refused all help from
social services despite the fact I had a disabled husband and a young
disabled child and I couldn't walk. I was refused state benefits because
I had no one medically qualified who'd state the cause of my illness. I
considered suicide and only didn't carry it out, because I had my poor,
disabled son reliant on me.
My G. P.
tried to send me to the A&E to see a consultant ophthalmologist at
P. hospital, regarding the black things floating and terrific headaches.
The Consultant threw me out without examination stating, 'floaters,
youíll soon learn to live with them.
appointments at the P. hospital were promised, but not received. In the
end, through the help of my M. P., I obtained an M.R.I. scan at
Addenbrookes hospital. The consultant radiologist who did the scan said,
'We can see the exact cause of your problem.' I was therefore surprised
when I returned to P. hospital to learn from the original consultant,
'there is nothing wrong with your back.' I can still produce a copy of
my DHSS claim for mobility allowance (which was disallowed) where the
consultant had told them that, 'the MRI scan was normal.
Eventually a private hospital in
London obtained the scans from Addenbrookes and wrote out their findings
to the DHSS pronouncing the back as inoperable, allowing the mobility
allowance. Her tribulations didn't stop there. Her eyesight, which had
so altered straight after the myelogram, had virtually disappeared in
her left eye and her G.P. tried to make another appointment at
Addenbrookes; but no appointment came. Despite repeated phone calls and
letters front he G.P. no appointment arrived. It would seem that her
previous run in with the ophthalmologist had not been forgotten. Blind
in her left eye, her right eye beginning to fade she got into a taxi:
'To go to
the eye casualty department with the intention of refusing to leave,
unless they did appropriate tests on my eyes. I sat there 1O hours. Luckily for me, there was an American woman
doctor on duty and not used to our corrupt NHS, she examined my eyes,
ordered a fleuroscene angiogram and when the yellow dye put in my arm
was photographed [it showed] oozing from the blood vessels in both my
retinas. I was told that I had 'old retinal haemorrhages, which had
caused the deterioration.
Eye problems have been well
documented in myodil victims, yet ophthalmologists are ignorant of the
fact. The point is, not that one or two people have had bad experiences,
but that, at varying degrees, a very great number of myodil victims (if
not all) have faced ignorance and disbelief from the medical profession.
CASE 6 Litigation Prohibition
The last case focuses on the way
myodil victims were prevented from litigating against those responsible
for their injuries and poses a question about Public Interest.
Myodil victims suffer dreadful
physical and monetary hardships because of the assaults upon them;
despite the immoral actions, battery and negligence, against their
persons, they are denied compensation: this has been done in a number of
ways and the legal profession have not been blameless here.
A class action started against the
makers of myodil but it was never allowed to come to court; thousands of
victims were denied justice; and the public interest has been
circumvented as a result. Litigants were forced to withdraw for various
case was thrown out by the consultant saying that the surgery I had
following the myelogram could have caused the arachnoiditis.'
This reason is common, however, even
the most superficial questioning by a competent solicitor would expose
the flaw in this argument. Surgical arachnoiditis and myodil induced
adhesive arachnoiditis are disparate conditions: though often confused
by the medical profession, their symptoms are considerably different.
paying £500 for the scan and £3000 to the solicitors they told me that I
would have to pay up front £37500 and a further £57000 six months
The exorbitant costs for myodil
victims is the most common reason given, but why were the costs so
excessive? Here is the explanation to one litigant:
I had to
arrange for the M. R.I. scans privately and then paid a number of
thousands to my solicitor only to be told by them that, if I wanted to
continue with the action, I would need to find approximately £40000 and
more later. I was advised that, unless I was extremely rich, or
extremely poor (some could get legal aid certificates), that it wasn't
worth carrying on.
confused, I asked why I needed to come up with such a sum and it was
explained that Justice May had made the decision that any litigants had
to pay the costs of research done into this case by the Legal Aid Board.
They had spent ten million pounds on a study of the case. I argued that
this was unjust and atrocious. All of the money used by the Legal Aid
Board for the research came from the very tax payers who where now being
asked to pay for it for again. Surely, I maintained, that it was unfair
to ask litigants to pay for research made on their behalf, when they had
provided money all their working lives to enable the research to take
place in the first place. I asked what would happen to the research and
was it accessible to the public -- after all it is public money that
funded it. I was told that unless the money was handed over, it would
not get used; and that the legal profession were in no way going to
challenge Justice May's extraordinary decision.
The legal mischief didn't stop here:
with the knowledge that this decision would effectively bar thousands of
victims from justice, Justice May also Issued the order that no myodil
victims will be able to sue the company after a certain date giving
litigants no chance to appropriate the evidence obtained by Legal Aid
Board, or to challenge the law.
This inequity extended to the public
arena too. There were many charges laid at the N.H.S. and the medical
profession in general, yet victims were barred from compensation from
those sources by the Hayman Enquiry, a one-sided report, completely
devoid of critical argument. The Hayman Report showed wrongdoing, yet it
was used as a reason to prevent compensation∑
another aspect to this case and that is that this is assuredly a Public
Policy issue: there must be an investigation to prevent such dire
consequences happening again. It must be in the Public Interest to ask:
THERE ANY OTHER PLACE IN THE WORLD WHERE SOMEONE IS LEGALLY ALLOWED, FOR
WHATEVER REASON, TO INJECT A KNOWN TOXIC, HIGHLY CORROSIVE SUBSTANCE
INTO ONE OF THE MOST SENSITIVE PARTS OF THE ANATOMY, WITHOUT THAT
THERE ANY SUBSTANTIAL REASON WHY THIS IS NOT BATTERY AND, THEREFORE, A
3. IF IT
IS A CRIMINAL OFFENCE, AND IT SURELY MUST BE, WHY ARE VICTIMS NOT
IT IN THE PUBLIC'S INTEREST TO CORRECT INJUSTICE AND PREVENT FURTHER
MYODIL VICTIMS, THERE CAN BE NO JUSTICE WITHOUT A FAIR HEARING AND A
CHANCE TO LOOK AT AND REBUT EVIDENCE.